Hospice stories, like all stories, have a beginning. Sometimes they start in a hospital, maybe a doctor's office, or the car ride home from a doctor's office-because it is easier to have the difficult talks in the car, or maybe in the dark at night when all things seem scarier.
My story started in my kitchen on the telephone. For years a friend had asked me to consider becoming a hospice nurse. When I was at a turning point in my life and career, I finally asked her to tell me about hospice. She not only told me but also took me to the hospice in Perrysburg, Ohio, that very evening.
As we entered the grounds of the inpatient center, springtime flowering trees lined the drive and it was as if we had entered a cloud. What peaceful, beautiful surroundings. Walking through the building, she explained the basics of caring for the dying and that hospice is a philosophy and not a place.
The staff at hospice taught me how to be a nurse, how to listen with my eyes and ears and heart. I learned that the dying and their families can sometimes only hear us say we can help. No matter where we are serving the dying, we are their guests. We are there to help them meet their goals; we have to get the symptoms under control so that patients and families can be together. It is impossible to say I love you, thank you, I'm sorry, or good-bye when you are in pain. We only have one chance to get it right and we must do our best.
I had been given the reason I became a nurse.
Then there was another telephone call in my kitchen. This time my husband was on the phone. It was just after Christmas and his father was telling him that his mother had cancer that had spread to her liver. We were stunned. The summer before we had hiked Brice Canyon and she had been stronger than I was.
Dozens of phone calls and a few weeks later we flew out to say good-bye. She was in an ICU surrounded by machines and almost too weak to talk. The adults in our family discussed hospice and my father-in-law stressed that she would be happier at home. I sat on the side of her bed, the oxygen mask covering all but her beautiful eyes, and asked her if she wanted to go home. She sighed and nodded yes.
She was home, her children from different states were home, and we were a family again. Everyone had a chance to spend time alone with her; she could hear her grandchildren playing outside her window; she could pretend to snarl at her teasing sons; she could hug her daughters as often as she wanted; and she died with the love of her life holding her hand.
People who are dying are in two worlds-they are here but also beginning to go back to where we start. They exist in sacred space. Those with them enter this space; I felt it in her presence.
When I returned to work I began to be aware of this sacred space in the hospice rooms. I am sure it was always there before, I just did not know how to notice. Being a hospice nurse became even more meaningful and I was sure I now understood how much of a difference we can make for patients and families.
Then there was a third telephone call in my kitchen.
This time I was the child and I was talking to my mother. She was on the way to the hospital with a mass on her kidney and spots on her lungs. Dinner was finished. It was almost spring, a Monday evening, and it was dark outside. It was my granddaughter's birthday, and I was preparing for work the next day. The details of those moments formed a picture in my soul that can still cause my heart to race and my breath to catch.
The doctor was the first one to say the word hospice. Mom did not say anything.
Later, I was the second. Mom said not yet.
Our family set up dinner schedules. We dropped by with food-it allowed us to maybe make up a little bit for all the other times we did not drop by. I learned I could sit through Fear Factor if it meant I could be with her. We helped clean out a closet and found out she still had a lot of crocheting to do. We also found that Dad is very romantic. We learned an awful lot.
On Easter morning Mom called me with a symptom. She told me it had stopped, to just come over after church. At church I suddenly realized what the symptom meant and I whispered this to my husband. He gently whispered back that he had thought that might be what was happening. I took communion to my parents, then knelt by my Mom's chair and asked permission to call hospice.
I was crying and Mom was crying. Dad was standing in the doorway. My niece and her husband were sitting on the couch. The sun was shining; in the shadows it created I could see the bump of the tumor under her gown.
She said I knew best.
Another snapshot for my soul album.
Her hospice bed and supplies were delivered. I picked up her medicines at our local pharmacy. We continued to take meals and to sit with her. (I avoided Mondays because a little Fear Factor goes a long way.) Dad was always there.
The next call was while I was at work. My sister was telling me that Mom was in pain and having difficulty breathing. I went upstairs to the homecare offices. Kristie, the homecare director, asked if we had a bed available. We did.
I have helped to orient many hospice team members. I always teach them that the most important thing to remember about an admission is to make the patient and family feel welcome. If nothing else is done, make sure the room is ready, the patient's name is on the door, and that you greet them when they enter the building.
That day, I walked out to the ambulance to meet my mother and my family. Her room was ready; her name was on the door. We were welcomed.
For 3 weeks we lived between home and hospice while Mom lived between this world and the next.
One of Mom's hobbies was to grow amaryllis from seed. Dad kept a fresh one in her room all of the time.
We did jigsaw puzzles constantly, just like always. My Aunt Jo brought Grandma every day and lots of people brought food. At the end of every workday, I walked into Mom's room and took off my name tag. It was my signal that I was daughter, not nurse. I was not on duty.
The hospice team took care of us, they took care of Mom, they took care of me.
We spent Mother's Day with Mom. She was surrounded by statues of angels, a personalized quilt from her coworkers, and a banner of her family tree made by my sister.
One Sunday she sat in a wheelchair at her window for 2 hours to watch a wedding on the hospice bridge. She had a romantic streak, too.
She played on a slot machine that was brought in for her. We had to unplug it when one of the kids hit the jackpot after we should have been asleep.
We said we love you. We said we were sorry. We said thank-you. We said good-bye.
She died on a Friday evening. Not all of us were there when she took her last breaths, but all of us had surrounded her with love and tears and laughter. She knew she was the center of our family.
The last of her amaryllis had wilted. It was dark. There were fireworks across the river. We wrapped her in her quilt. We walked out with her and followed her as she left through the cloud of trees in the driveway.
I won't forget.
This spring her amaryllis bloomed again.
Thank you to the brave hearts of hospice. Everyday you make a difference, everyday you help. Many families call you angels on earth. I know that we are human beings trying our very best to do the work of angels.
Thank you families. Thank you for allowing us to help. Thank you for allowing us into your sacred space. Thank you for allowing us to be part of your precious stories.